Division, Again, but of a Different Sort
Published July 01, 2009 @ 04:00PM PT
I wrote (perhaps way too much) about professional / parent / self-advocate differences recently and the previous week (it is a topic that interests me very much). There's another sort of divide though: the division between the "autism community" and the greater cross-disability community.
At the Megaconference, there were mostly vendor booths from 1) disability rights organizations such as Disability Rights Oregon and the State Independent Living Council, 2) disability-positive service or research organizations such as Oregon ARC and the OIDD, 3) assistive technology companies, selling everything from ergonomic keyboards to telephones to toys.
...and then there were the autism-related booths. All about snake oil, pity, and panic. A harsh reminder of what disability rights groups have rallied against.
There were 65 presentations given over the course of three days, on topics from community weaving to the ADA. Those which were not autism-specific included things like the joys of communication without speech, assistive technology, healthy lifestyles, empowerment, acceptance, and accessibility.
...while the autism-specific presentations were about remediation, normalization, and intervention (remember what Kunc had to say about that).
It's as though autism has been left behind in a pre-1960's, pre-civil rights era. Often I feel as though many people who work specifically with autism have no idea that we are part of a larger community--one that has fought and won some important civil rights battles, including initiating a cultural shift away from the attitudes that produce such demeaning treatment. What's up with that? And, way more importantly, how do we fix it?
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Comments (3)
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Dora is committed to improving quality of life for individuals on the autistic spectrum--including herself! She is Co-director of the Academic Autistic Spectrum Partnership in Research and Education and a member of the Autistic Self Advocacy Network's Board of Directors.
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"Often I feel as though many people who work specifically with autism have no idea that we are part of a larger community"
Many people who *live* specifically with autism have no idea that we are part of a larger community! I myself only fell into the cross-disability independent living communtiy by accident: I needed a job, and I saw a newspaper ad that mentioned "personal experience with disability".
Even at the large annual disabilities conference we have out here, autism is always its own separate strand. I seldom go to it, actually, preferring to interact with intersting people who have different disabilities. Try it! There are a lot of them out there!
Posted by Mark Romoser on 07/01/2009 @ 04:14PM PT
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I had no clue, either, for the longest time. When I was diagnosed (1996), there was no autism community of note online, and the journal articles I read were pretty clueless to say the least, so I ignored autism-specific issues for a decade while I tried to figure out how to hold down a job. I went back to them a year ago when I joined Wrong Planet, then started reading up on disability rights issues in general. (It was a special interest for a while.)
Even today if you go to the Autism Society here, they have an information package for parents, but nothing for autistic adults. Well, last time I checked they had a page of links to generic disability groups (who are unlikely to know anything about autism) and autism web sites, but that was it.
I think a lot of the disability rights awareness happens at universities, and if you can't tap into that when you're at university (perhaps the disability centre is not accessible to autists, for example?), then you're out of the loop. Also, the autists who have grown up with supports are still pretty young, and most 20-somethings don't want to think about their limitations much. I didn't.
Give it ten years, and a whole bunch of young adults will be hitting the roof in style.
Posted by Anemone Cerridwen on 07/01/2009 @ 06:34PM PT
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Your note "I think a lot of the disability rights awareness happens at universities" is super interesting to me. I need to think on that quite a lot. Thanks.
Posted by Dora Raymaker on 07/01/2009 @ 06:55PM PT
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